September 2017
Newsletter

You may remember that in 2016, government of India put up on its website the draft of an end of life care law. A major problem that we all identified in the draft law was the confusion over meaning of terms, particularly euthanasia being confused with withholding or withdrawing artificial life support.

During the last International conference of medical ethics at Pune, we requested Dr Soumya Viswanathan, the President of ICMR, to come out with official terminology and definitions on the subject. Obviously realizing the importance of the matter, she immediately agreed and entrusted work with Dr Roli Mathur.

A working group created for the purpose with the chairman of Pallium India as the coordinator and stalwarts from the Indian Society of critical care medicine, Indian Academy of neurology and Indian Association of palliative care taking the lead, has created the document which is now on the ICMR website. We must particularly recognize the phenomenal contribution by Dr Naveen Salins who did the lion’s share of the work in creating the draft document.

Thank you Dr Soumya Viswanathan, Dr Roli Mathur, Dr Raj Mani, Dr Roop Gursahani, Dr Naveen Salins and many others for making this happen. And thank you Karunashraya Hospice for hosting the working group meetings.

The recent verdict of the Supreme Court of India on the “privacy act” includes an observation by Justice Chelameswar on the right to privacy being inclusive of the right to self-determination on end of life care.

Please see the following evaluation by Arghya Sengupta:

“I have closely read the judgment and having been part of the case might be able to help in decoding some of the legalese.

1. The judges have unanimously held privacy to be part of personal liberty that we enjoy under Article 21 of the Constitution.

2. This essentially entails the recognition that an individual ought to be free to decide for himself/ herself in critical matters without interference from others/ state.

3. The question which will then arise is: What are these critical matters?

4. Though the answer to this will develop on a case-by-case basis, one of the judges Justice Chelameswar, says on p. 303 (of the pdf; p. 37 of his opinion), that one such matter is an individual’s decision to refusal to prolong treatment and terminate one’s life.

5. While this is not binding law, it provides a strong argument which can be used when the matter is next taken up, either legislatively or in court, that the right to privacy ought to extend to the individual’s decision to refuse to prolong treatment. However it should be noted that the right claimed is not absolute and is subject to reasonable restrictions. To assess whether any restriction by the State on the right to refuse to prolong treatment will be reasonable, will depend on the exact nature of the restriction in that case.

So overall, the judgment on the whole, and the specific reference to the refusal to prolong treatment, are both encouraging developments. Trust this clarifies.”

What would you do if you were an oncologist and were given 77 acres in a beautiful valley in Vishakhapatnam and asked to build a cancer centre?

You would get a good architect, good engineering team, select and order the right equipment, look for the best staff, and start constructing, wouldn’t you?

Most people would. But not Dr Raghunadha Rao. He did all that, but at the same time, he also started seeing patients. Often, with the patient under a tree, an I.V. infusion set hanging from a low branch. Then he brought in portable cabins made out of discarded containers.

That is not all. He also brought in one of the best palliative care physicians in the country, Dr Vidya Viswanath, and simply integrated palliative care into cancer care.

Wow, 11 events in two and a half days! Pallium India joined the vibrant team at Sneha Sandhya Age Care Foundation in Vizag (Vishakhapatnam) on an initiative to improve access to palliative care in Andhra Pradesh. We use the word ‘vibrant’ with emphasis. Truly vibrant.

The days were packed with activities – several awareness programs for the public, sensitization sessions for medical students and faculty of Health University, the fifth anniversary celebration of Age Care Foundation, you name it, we have done it.

We cannot but admire the team led by Dr Raju, who closely collaborates with Dr Raghunadha Rao and Dr Vidya Viswanath at the Cancer Centre, and with several educational institutions.

We have signed an MoU with Sneha Sandhya Age Care Foundation. We promise you more action.

The Worldwide Hospice Palliative Care Alliance and the International Children’s Palliative Care Network have submitted a response to the WHO online consultation on the draft outcome document for Montevideo Roadmap 2018-2030 on NCDs as a Sustainable Development Priority.
The main concern noted in the submission is the absence of any language on palliative care within the draft outcome document. WHPCA and ICPCN note that this is not in line with the WHA resolution 67.19 on palliative care or the Global Action Plan on the Prevention and Control of NCDs.

More than 75,000 patients with advanced cancer are in pain in MP. Government Cancer hospital, Indore, with the support of Pallium India started a pioneering palliative care facility in which pain and other symptoms are treated along with emotional support. Jivdaya foundation also supports this initiative.

A workshop was held on 30 August 2017 to discuss modalities of palliative care delivery with special emphasis on safe use of morphine. The program was attended by doctors and nurses from several hospitals as well as representatives of Sahayata, Lions club and several other non-government organisations.

Minister for health, Sharad Jain, and Usha Thakur, MLA visited the workshop and extended their support for the compassionate activities of palliative care personnel.

[Photo: Sharad Jain, minister of health, with faculty and organise of workshop at Indore]

The 25th Annual Conference of the Indian Association of Palliative Care (IAPCON 2018) will be held from 23rd to 25th February, 2018, at Jawaharlal Auditorium, AIIMS, New Delhi. The theme of the conference is: Create, Collaborate and Communicate.

The Conquer Cancer Foundation (CCF) of ASCO is accepting applications for the inaugural 2018 Global Oncology Young Investigator Award (YIA). The Global Oncology YIA is a one-year grant that provides research funding to early-career investigators to encourage and promote quality research in global oncology and to develop the next generation of researchers to address global health needs.

For 2018, the Foundation has funding for 5-10 grants, with total awards between $25,000 to $50,000.

The application deadline is September 21, 2017, at 11:59 PM (EDT). Recipients will be notified in April 2018.

Cancer Aid Society invites Application / Nomination from Doctors, Paramedical Staff and Social Workers with demonstrative leadership in the field of Palliative Care for the Cancer Patients from India, Bangladesh, Bhutan, Nepal, Pakistan, Afghanistan and Sri Lanka.

Cancer Aid Society is an NGO in Special Consultative Status with United Nations ECOSOC, working across India since 1987 on Palliative Care, Advocacy, Prevention and Control of Tobacco, Cancer and other Non Communicable Diseases.

The International Association for Hospice and Palliative Care (IAHPC) is seeking a skilled Senior Editor for the organization’s monthly Newsletter.

The IAHPC Newsletter (NL) covers topics related to the progress, challenges, resources, solutions and opportunities for the advancement of palliative care and hospice care around the world. The NL is published electronically before the 10th of every month on the IAHPC website. A shorter version is also emailed to approximately 8,000 people across the world with links to each article on the website.

Interested candidates, should send a copy of their CV, an example of previous work, salary requirements, and a cover letter including a statement explaining their interest in the IAHPC and this position. The materials should be sent to: Liliana De Lima, Executive Director at ldelima@iahpc.com

24 August marked the death anniversary of Dr Elisabeth Kubler-Ross, the celebrated American psychiatrist who transformed “death, the enemy” to “death, the inevitable consequence of life”. Her seminal work on the five stages of grief has allowed clinicians to help people struggling from losses.

On that day, Red FM radio channel at Trivandrum dedicated several hours to Kubler-Ross anniversary and its message of end of life care. Listeners got inspiring words of compassion interspersed with popular music.

Pooja Kashyap, a journalist-turned-artist who has already presented three solo exhibitions in Calicut, Kannur and Payyannoor in the recent past, commemorated the day with the opening of her art exhibition, Celebrating Life, at Russian Cultural Centre at Trivandrum. DGP Lokanath Behra was the chief guest at the event. 30% of the proceeds of the sales go to supporting care of cancer patients through “Art Can Care”.

“My two cousins, a civil servant and a doctor, died of cancer at a very young age and it still haunts me. It is also an ode to them. It is festive season in Kerala and I think it is the best time to do something for the underprivileged,” Pooja Kashyap said. Read the report in The Hindu.

On August 1, Times of India reported that though the Indian Deaflympics contingent won five medals at the 2017 Deaflympics held in Samsun, Turkey (July 18th to 30th), there was hardly anyone at the airport to welcome them back with cheers.

Compare that with the milling crowds that welcome back a cricket team after an international victory.

It is easy to blame it all on the sports Ministry or the Sports Authority of India; but we would like to ask, where were we all?

Hubert Humphrey said, “The moral test of a society is how that society treats those who are in the dawn of life…the children; those who are in the twilight of life…the elderly; and those who are in the shadows of life…the sick, the needy, and the handicapped.”

The work of Diana, Princess of Wales, relieved the pain and suffering of thousands of people with incurable illness around the world.

During her lifetime, Diana, Princess of Wales, was dedicated to improving the lives of the most disadvantaged people in the UK and internationally. She used her high profile to raise funds and awareness for critical but challenging and stigamatised issues such as those who were living with life-threatening illness such as HIV and AIDS.

Functioning between 1997 and 2012, The Diana, Princess of Wales Memorial Fund continued the Princess’ humanitarian work in the UK and overseas. One area of focus was the need for palliative care – holistic care to treat avoidable pain and suffering of people with serious illness and their carers. 20 years after her death, hospice and palliative care programmes, organisations and services supported by the Diana Princess of Wales, Memorial Fund continue to bring comfort and hope to those suffering around the world – irrespective of what the illness is.

The Diana, Princess of Wales Memorial Fund was ahead of its time in supporting a holistic, patient and family centred approach to care, encouraging community based models in countries such as Kenya, Malawi, South Africa and Zimbabwe.

We concluded a 5-day home based palliative care training for doctors, nurses, pharmacists and multi-purpose worker (MPW) in Tripura last week. We, a project officer and three trainers – Dr. Vidya Viswanath from Vishakhapatnam, Andhra Pradesh, Dr. Iqbal from Silchar, Assam and I travelled from Trivandrum, Kerala to train palliative care teams from all eight districts of Tripura.

Nurse Bishwajeet shared with us a heart wrenching story that describes the dire need of palliative care in our society. In one of the home visits, the palliative team reached the patient’s house and found her with a knife in her hand and blood oozing out of a wound on her breast where the fungating ulcer of the breast cancer was causing excruciating pain. The family had isolated her and she was trying to kill herself. With no pain relief, a fungating ulcer and maggot-infestation, killing herself seemed the only escape for her. At the age of 42, she had attempted to kill herself earlier also by jumping into the river but the villagers had saved her. Her family had isolated her from the household. She was put up in a room away from the main house with separate utensils for her food. With the isolation and deteriorating health, suicide becomes an obvious choice to a lot of our patients.

The district palliative care team removed almost 200 maggots from her wounds, provided medicines and counselled her. Then they took her to the RCC, Agartala and provided pain relief with morphine. After the treatment in RCC, she was able to walk around. The family had left the patient alone in the hospital. With the intervention of the palliative care team, they took her back.

Pallium India’s new initiative, partnering with Regional Cancer center of Agartala and the National Health Mission (NHM) of Tripura hopes to bring about a positive change for a lot of such people.

It is many years since we started working with RCC to establish the state’s first palliative care center and we are proud of this new state-wide initiative.

“I was invited to the 50th Anniversary service in Southwark Cathedral, London, to celebrate the 50 years of the founding of St Christopher’s Hospice. 50 of us were chosen to carry a candle in the procession marking each of the 50 years and representing a different strand of palliative care. The service ended with 50,000 petals drifting down for each of the patients cared for over the 50 years and a moment to reflect.”

St. Christopher’s Hospice was established in 1967 by Dame Cicely Saunders.

Cordova Public School Trivandrum, a school with a heart, has already been involved in supporting palliative care. They are now gearing up to more organised activities which were inaugurated at an elegant function on 4th August, 2017.

Dr Serpil Özsezgin, Palliative Care Health Services, Turkey, explains the journey that has led to her setting up a mobile palliative care service.

I worked in the ‘Painless Living Centre’ in Izmir, from 2000 to 2010 on pain management of cancer patients and also Alzheimer’s disease and dementia, as an Anaesthesiology and Reanimation specialist. I did my best to comfort patients and alleviate their suffering, and to support bereaved family members. Based on my experiences of up to 1,000 end-stage cancer cases, I identified lack of empathy, barriers to opioids, opiophobia and thanatophobia.

Fortunately, I met the ATOME project (Access to opioid medication in Europe) (1) that sought to overcome the same obstacles to opioid access as I had been observing for ten years.

The Maintenance and Welfare of Parents and Senior Citizens Act, 2007, is aimed at ensuring that senior citizens, who cannot fend for themselves, are provided food, clothing, residence, medical attendance and treatment by their children or relatives. But not many have actually used the law to claim maintenance, and in the few instances that cases have been filed, there has not been much success, a recent study shows.

Lined in a plot beneath lush green trees at Adakkakundu, a remote hilly hamlet in Kalikavu panchayat, are six single-storey houses. No, these are not luxury villas built by any known builder. They are houses constructed for elderly people abandoned by their families.

Led by Bappu Haji, an octogenarian, the villas have been built by a group of social workers under the aegis of HIMA (Haven of Intimacy and Merciful Atmosphere). The six villas are now home to 10 people from across the state.Known for his charity and educational works, Bappu Haji, 85, contributed three acres of land for these villas, in addition to a huge amount as financial assistance.

“We live at a time when a large number of aged people are forced to leave their homes for a number of reasons,” says Bappu Haji. HIMA functionaries say Haji’s close affinity to social and political leaders helped him extend a helping hand to the poor.

For the last 22 years, since 1995, Soma Shekara Chari’s life has revolved around caring for terminally-ill patients. Home visits, which include bathing them, giving them a haircut, shaving the male patients and sometimes even indulging them with knick-knacks on his own volition, take up a lot of his time.

But this is not how Shekara, as he’s commonly known, used to be. He was once, in his own words, the “typical” auto driver who would “bully” passengers, and at the end of the day, splurge his day’s earnings on alcohol and cigarettes.

Pallium India supports the education of children from families ravaged by disease. Many of them were on the verge of dropping out of school owing to financial difficulties. This year, Pallium India supports the education of 300 students (upto +2). The average fee (including tuition & transport) is estimated to be ₹7,500 per child, this year. We need your assistance to meet the expense.

Can you help?

Our target is to raise ₹5,00,000 byJuly 15th, 2017.

Whatever you donate, however small an amount it may seem, would go a long way in reaching our goal.

You can donate online, or through NEFT, or via demand draft. Let us know that your donation is for “Children’s Education Program”. Please visit this link for details: http://palliumindia.org/donate/

The money you give will pay for essential free medicines for the poor, for their travel to the clinic or for schooling of their children, or other forms of care. Please give whatever you can. No amount is too small.

PARTING SHOT

The 2015 Quality of Death Index report published by the Economist Intelligence Unit exposed the poor quality of end-of-life care in India. Among the 80 countries studied, India ranked 74th in the affordability of care at the end of life. A 2011 Lancet article on healthcare equity in India showed that 39 million Indians are becoming poorer every year due to rising healthcare costs. Most of these costs are related to aggressive medical interventions at the end of life. According to a 2014 World Bank report, the government spends less than 2% of the GDP on health and 89.2% of Indians spend out of pocket to meet healthcare expenses. A review by researchers from the Government Medical College in Calicut, Kerala, on the increasing out-of-pocket healthcare expenditure in India showed that there has been a more than 100% increase in outpatient expenditure and 300% increase in inpatient expenditure in the last 10 years. In India, 5.6% of families manage out-of-pocket healthcare expenditure by taking out loans.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.